New to hospice & have questions about your experiences

Howaboutnow

Hi All,

DH is at home with me, and just qualified for hospice after an in-home assessment. I don’t believe he is in his final 6 months.

For those in Stage 7 (or Stage 8) and have used hospice, how long has your LO been on it? Is it hard to requalify after the initial 90 days and every time thereafter?

The hospice company told me people can “graduate” from hospice and be requalified when a further decline happens. Some can be on & off it for years. I’m so anxious and very grateful for the help while also nervous about keeping the help.

What were your experiences with it please?

Vitruvius

My DW is into Stage 7 and was placed on hospice earlier this year due to a marked decline. She is in a MCF and they recommend hospice. After 6 months she was discharged as the hospice agency thought she had stabilized. I objected, and noted that dementia patients often seem to stay on hospice for longer than 6 months. But the agency stated that Medicare was becoming more strict about this. I cynically suggested that the hospice agency’s position was my DW was not dying fast enough for them.

After her discharge I arranged for her to be on palliative care, which is like “hospice lite”. After the palliative team became familiar with my DW’s condition they thought she really belonged on hospice and suggested she be assessed by a different agency. The new hospice agency had no trouble finding her appropriate for hospice which she is now on again. I asked the new agency what would cause her to be discharged. They admitted that it was possible if my DW had a prolonged period where her condition was stable, but based on what they saw they considered it unlikely. Only time will tell.

I might also note that the two agencies benefits were not identical. The first agency would not cover DW’s sertraline prescription, while the second one does for example. The first agency did have a music therapist visit regularly, which my DW actually responded to. The second agency does not provide this. BTW, in my opinion, Palliative care is nowhere near as useful as hospice as it deals more with emotional support rather than physical support.

If you would like more info let me know.

Lakhota

It will be seven years the 26th of this month that I brought my DW home on hospice palliative care and stopped all medication at that time. The Dr. agreed that it was the right thing and the hospice nurse after looking at the records said that she would not be on it long. They did an evaluation in three months and I knew that she would be removed as she had made improvements.

At this time she still takes no medication and has been a very low and slow progression. We are need of finding a new primary care physician and I think they will suggest place it her on hospice at this time as she is down to only 95lbs even though she eats very well. The DW is still at home with me and we have a caregiver with her during the day so I can continue to work.

Th short amount of time that we were on hospice it was a good experience and they took good care of her. Do not worry about requalifying if he is far along he most likely will. There have been people on this site that their spouse was on hospice for two years or longer.

fayth

My spouse was on hospice for 2.5 years before he died. He was home until the last 11 months. Hospice cared for him in memory care, too, and was able to help me find a good placement for him. There were times that his decline was slow, but he kept losing weight. I found that the hospice nurse was interested in keeping him ON services and not looking to disqualify him. I also had the experience of one hospice agency denying him care but another agency readily accepted him. This has always seemed strange since Medicare was paying in any case. Hospice was a godsend and gave me the support to keep him home as long as I could. We got at least weekly nurse visits, 3x per week aides who bathed him, 2x per month music therapy, all necessary supplies: hospital bed, hoyer lift, wheel chair, incontinence supplies. Also we had a social worker and a chaplain. I was able to get a few days of respite each month once covid eased. It made all the difference.

ImMaggieMae

Very good question, Howaboutnow. It seems like there can be a lot of differences between different Hospice agencies. Some won’t treat a UTI and some would because it would fall under comfort care. It seems like there are differences in what medications for existing conditions they allow. Medicare pays for it and sets the rules but I guess different hospices interpret them differently. It’s all very confusing. But it would be helpful to a lot of people who take care of their spouses or family members at home and don’t have extra help.

Joe C.

My DW who is in MC has been on hospice for for 7 months and there has been no conversation about reevaluation. The hospice nurse told me during the initial evaluation that it is not uncommon for someone to be on hospice for several years. I know other residents in DW’s MC have been receiving hospice services longer than she has on hospice.

Howaboutnow

Thank you, All, for the feedback. This helps me keep realistic expectations. When DH qualified for hospice just Friday, it felt like a lifeline was tossed our way. I’m stressing a bit about losing it before I’ve had it 🙃. I need, to restate what we are told ad nauseam throughout this miserable disease, to focus on today. That doesn’t come naturally for me, someone who is always worried about the “tomorrows”.

For others reading, my first impression of Hospice has been “comfort” personified in each member of the team I’ve been in contact with. Today i meet with the social worker and with our assigned RN. So the work will begin….

I know DH will get worse, i know the caregiving needs will keep growing, i know I might fail myself and not be able to keep DH at home. But having an experienced, trained, coordinated, compassionate team that soley works “all things end-stage” closer to us might help me keep at it longer.

I’m thankful for the “hope”.

ImMaggieMae

Another question for those using hospice care. From what I understand, hospice takes over all medications including neurological. Does that mean that you lose your neurologist? It took us over 9 months to find and get into a neurologist, one that we like very much. As with any specialist in this area, it’s very difficult to find one who is accepting new patients. If we were to go on hospice for a while and then be re-evaluated and they decide he isn’t declining, I don’t know what we would do re Alz/dem medications that he needs. It’s unlikely that we would be able to get back into the same neurologist who is no longer accepting patients. His medications do change from time to time.

dhyink

My husband has been on hospice since June of this year. In addition to dementia, he has a seizure disorder. We had the option of keeping our neurologist, but I decided to drop him. DH is bed-bound and moving him anywhere is a big production. I hope that he can remain on hospice as long as needed, the support and equipment is much better than he had in palliative care. For example, we got a longer bed (DH is tall) with a motor rather than a crank to lift and lower the bed. We've had a couple of times this year that we thought that he was near death, but he comes back a little worse off than before. So, he seems to be on a slow, steady decline.

ButterflyWings

Bill,

Bless your heart. I echo all the comments above. This post is long...hope it makes sense and helps add to the ideas.

Hospice is a godsend. DH has been on in-home hospice care for 2+ years now and I am the primary caregiver with some home health aide support as he has progressed to current early Stage 7. Increasing HHA hours covered by the VA as he has declined - so that I can gradually work more hours, to support us.

We have dealt with 2 hospice agencies with the first one "graduating" my LO after about 8 months when they were acquired by a bigger company that prompted his entire team to resign (!) due to the cutbacks they instituted. Their discharge reason was that he was not losing weight, which is a ridiculous criterion for hospice decline when dementia is in the picture. He does not know when he is full, so is an automatic eater (would stuff himself until sick, which is a function of his Alz progression, not a sign that he's improving and no longer terminal =|

I had him evaluated by another hospice agency and he was readmitted in a little more than 24 hours. Clearly unstable, a fall risk, in respiratory distress, and fainting. He should never have been discharged but we have been very happy with the current hospice so it worked out. All the home equipment was removed (Broda chair recliner, oxygen, bath chair, bedside commode, fall mats, hospital bed, roll-ator, etc. and the other agency brought theirs in, an hour or so later.) Lots of hustle and bustle, getting used to a new team of folks, but overall it didn't matter much except the stress it caused me worrying and coordinating, etc.

Generally I'd say my DH's nurses were both angels on earth. I think hospice nurses are a special breed. They definitely have been caring, sensitive, developed a bond with my DH, and know their stuff re geriatric health concerns, dementias, and all things comfort care.

Day Care - DH refused to leave our home for a couple of years so we were literally housebound. I could not get him out the door and into our car, much less to an Adult Day Care center. I so admired or envied you, Bill, for being able to get that done for so long! But I couldn't imagine the stress of getting your DW ready, to the DayCare, YOU to work for a full day, retrieving her and getting you both safely back home for your 2nd and 3rd shifts as full time dementia caregiver, only to repeat it all with the next sunrise.

You have really been accomplishing a feat that few would succeed at and with this progressive disease, it was never going to last forever. I'm sorry you had the panic attack but it sounds like you are doing exactly as you should now -- taking that as a warning sign that enough is enough and you need to make a change. Maybe it is accessing the hospice care supports that are SO helpful, and finding what other benefits you and she are entitled to, to lighten the load -- whether enabling you to work from home full time or part time -- or whether you decide to take some respite periods and see how you both do. That would give you some research, aka trial runs at a facility or 2 of your choice in case your decide at some point that placement at MC is a future need.

Retirement - I had to cancel my early retirement decision when it turned out we can't live on my part-time salary plus my early SSA, because 50% of my necessary earnings were deducted from the monthly SSA check leaving me with $0.00 the last 2 Soc Security checks 😶. This was after consulting with SS admin and a financial advisor. Truly between a rock and a hard place. But at least I canceled within the 1 yr grace period, and will "try" to outlive by DH so I can one day hopefully get to have some years at full retirement age (and benefits) to just detox from this nightmare that has been my 50s and early 60s. That's the mission now. Comfort care through the dreaded stage 7, for my beloved and surviving his dementia, for me. Goals. They don't sound too pretty, but that's our reality. You will make the best of your choices, I am certain.